Fédération des Malades Drépanocytaires et Thalassémiques SOS Globi

Phone number: 
+33164309332
National alliance: 
No
Federation: 
No
Country: 
France
Membership type: 
Full member

Associazione Veneta Per La Lotta Alla Talassemia

Email: 
Phone number: 
+39042533806
National alliance: 
No
Federation: 
No
Country: 
Italy
Membership type: 
Full member
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases